Audio 3:50
Cancer gene carriers not taking up prevention strategies

Katie HamannUpdated
Mon Nov 18 17:05:00 EST 2013

Angelina Jolie's decision to have her breasts surgically removed after discovering she carried a genetic mutation greatly increasing her risk of cancer sparked enormous interest in genetic testing for BCRA-1 and BCRA-2. But cancer researchers say many women who know they carry the gene aren't taking preventative measures.

Transcript

ELEANOR HALL: What would you do if you knew you carried a gene that dramatically increased your chances of developing cancer? It's a question confronting many Australian women who've taken genetic tests to determine their predisposition for breast and ovarian cancer.

But researchers from Melbourne University and the Peter MacCallum Cancer Centre have found that many women whose tests have come back positive are not taking the preventative action that cancer specialists expected them to.

Katie Hamann has more.

KATIE HAMANN: The announcement in May this year that Hollywood actress Angelina Jolie had had both her breasts surgically removed to prevent cancer threw a spotlight on the challenges faced by women who discover they carry gene mutations which drastically increase their risk of developing the disease.

Ms Jolie chose to have a genetic test after losing her mother to ovarian cancer.

Gabrielle Mattille was 12 years old when her mother died of the disease. Last year, at the age of 37, she had her fallopian tubes, ovaries and uterus removed to prevent the same fate.

GABRIELLE MATTILLE: I haven't looked back. I feel great for having done it. Now I don't have to worry about ovarian cancer, which is fantastic because that was always in the back of my mind.

KATIE HAMANN: Like Angelina Jolie, genetic profiling revealed that Gabrielle Mattille was a carrier of the BCRA-1 gene mutation. And like other young women confronted with this information, there were things she had to finish before having radical surgery.

GABRIELLE MATTILLE: I already had two sons and I knew I wanted to have a third child. So I waited until I had my third child and then once I was confident that I'd finished having my family I went ahead and had the surgery done.

KATIE HAMANN: For the last 15 years, researchers from the Peter MacCallum Cancer Centre and the University of Melbourne followed more than 320 carriers of two genetic mutations BCRA-1 and BCRA-2.

They tracked how these women responded to their discovery and whether they took advantage of prevention strategies, such as surgery or risk-reducing medication.

Professor Kelly-Anne Phillips was the lead author.

KELLY-ANNE PHILLIPS: What we found was that many of these women had not really undertaken any preventative strategy. About one in five had decided to have bilateral preventative mastectomies. About 38 per cent had undertaken removal of their ovaries and fallopian tubes, which is very effective in reducing the risk for ovarian cancer.

But only a very small proportion - about 3 per cent - had used medication called tamoxifen, which we know reduces the risks of breast cancer.

KATIE HAMANN: Professor Phillips says her research will now focus on why women at higher risk of developing cancer aren't doing more to prevent it.

KELLY-ANNE PHILLIPS: The uptake rates that we see in Australia seem to be relatively low compared with uptake rates internationally. And the next phase of our research will be to undertake one-on-one interviews with these women, and also with their clinicians, to try and understand what the barriers are.

KATIE HAMANN: I understand that the preventative drugs, the selective oestrogen receptor modulators, are not actually available under the PBS. Do you think that's part of the problem?

KELLY-ANNE PHILLIPS: Yes. Tamoxifen is not listed on the PBS for prevention of breast cancer - it is of course listed for treatment of breast cancer. And we know from previous research that we've published where we interviewed clinicians, that that is a barrier to clinicians prescribing these medications.